Families find support at Island Beach State Park

Joanne Heer and son Andrew, 13, who has autism relax on the beach after lunch. They are from Middletown. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

Susan Burgess of Manalapan and her son Brian, 23, who has Cerebral Palsy wade in the surf. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

Colleen Wojna of Carlstadt, NJ gives her daughter Jessica 10, a jug as they play in the surf under watchful eye of lifeguards. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

Island Beach Lifeguards Kayla Irwin and Troy Buglio play in the wet sand with Jessica Wojna of Carelstadt, NJ, who has Epilepsy, as her parents Gene and Colleen look on. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

Susan Burgess of Manalapan and her son Brian, 23, who has Cerebral Palsy share snacks after lunch during beach day. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

Jessica Wojna, 10, of Carlstadt, NJ, who has epilepsy, dives into the waves under watchful eyes of lifeguards and her parents as she enjoys day at beach. Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

The Nature Center brought out a Corn Snake and a turtle for the kids to see and Frankie Racioppi, 2, whose mother is with the Epilepsy Foundation of NJ, got to pet the turtle. during Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

The Nature Center brought out a Corn Snake and a turtle for the kids to see during Special Needs kids get their Day at the Beach at Island Beach State Park on August 12, 2014. Peter Ackerman/Asbury Park Press Gannett

ISLAND BEACH STATE PARK – Eight years ago, Kelly Pretz of Brielle was diagnosed with epilepsy after suffering a series of increasingly serious seizures.

The 18-year-old has been seizure-free and off medication for three years now. But she came to Island Beach State Park on Tuesday to support and connect with others affected by the neurological disorder.

About 50 people affected by epilepsy and their families met at the Governor's Mansion for "Day at the Beach," an event held by the Family Resource Network and the Epilepsy Foundation of New Jersey.

Pretz experienced numerous seizures before a doctor told her family that she had epilepsy.

"You know something wrong was happening," she recalls of the first partial seizures she experienced.

The condition is a misfiring of the brain that produces different types of seizures. In some cases, people with the disorder can lose muscle control and fall, said Andrea Racioppi, associate director of the Epilepsy Foundation of New Jersey. In other cases, a person might be seizing when they wander aimlessly or pick at their clothes, she said.

About 70 percent of people with epilepsy control their symptoms through medication, Racioppi said. Others have implanted medical devices that control their brain activity, or service dogs that are trained to help them in emergencies, she added.

"In the majority of cases, people with epilepsy have normal IQs and live ordinary lives," Racioppi said, but added severe forms of the disorder can limit driving and make showering or bathing alone dangerous.

Pretz could not go to sleepovers during her years at Manasquan High School or climb obstacles in gym class. She also waited a year longer than her friends to get her driver's license.

For years, she kept her diagnosis a secret, and wrote a book, "Rain at Midnight," about the experience. Now the young author is preparing to attend Bucknell University with help from an Epilepsy Foundation scholarship.

At the Governor's Mansion, Michelle McArdle, 33, of Deptford in Gloucester County recalled her 13-year-old son's seizures.

"I thought he was faking it," she recalled.

Her son had a grand mal seizure on the morning of his 10th birthday, and McArdle recalled seeing his mouth foam and his eyes roll back in his head. Now, her son takes eight pills a day, but still suffers from seizures. McArdle runs a support group for epilepsy in southern New Jersey.

"Often times, epilepsy is a secondary diagnosis," Racioppi said.

For example, about 30 percent of people with autism have epilepsy, she said.

Joanne Heer, 49, of Middletown brought her sons Cody and Andrew to the event, where she hugged Andrew on the beach while Cody played in the surf. Both boys have autism, but neither have epilepsy, she said.

For three years Heer has attended the Day at the Beach, which in previous years included a greater number of families affected by autism and developmental disabilities. The annual event has helped her bring her boys to the beach without facing the critical comments and stares from other beachgoers, she said.

"You don't have other people looking at you," Heer said of the Day at the Beach. "Here, they (Cody and Andrew) can just be who they are."

Amanda Oglesby: 732-557-5701; aoglesby@app.com

KNOW THE FACTS

Epilepsy is a seizure disorder that can have no known cause, or be related to brain tumors, head injuries or exposure to toxins or parasites.

About one in 26 people will be diagnosed during their lifetime with epilepsy, and 2.7 million Americans have the disorder.